Sometimes I Feel

There is no point sugar coating it – FTD is a terrible disease and watching someone you love change because of this disease is agonizing.

It is normal to feel a range of emotions. One day you may feel sad, the next day you could feel scared, then suddenly you might feel totally indifferent. As a teen, you already face many situations that can make life feel a little out of control. When you add in having to cope with a parent who has FTD it can become even harder to stay on top of it all.

It can be hard to know what you are feeling or why. You may snap at a friend over something little or become obsessed and hyperfocused on a new activity to the exclusion of other things. You may find reasons to avoid spending time at home or you might prefer to stay home and spend hours alone in your room.

Trust yourself and your feelings

Thoughts, emotions and actions are closely connected to one another. Rather than ignore unsettling emotions, take time to tune into them. With practice you can begin to understand better what is contributing to your mood and make good choices about how to handle the challenges you may face in your current family situation and in the future as an independent adult.

Some teens in difficult situations turn to drugs or alcohol to find some comfort when their lives feel out of control. These poor choices often lead to more bad decisions and problems that can have serious emotional and even legal consequences. Your focus should be on taking control of the crazy mix of emotions you are feeling and not allow your emotions to control you.

Shame, anger, and fearFeeling embarrassed by a parent’s behavior may be the most commonly shared experience of children and teens that have a parent with FTD. Many kids feel different from their peers when a parent is ill. The particular symptoms of FTD, especially the behavior changes, increase the chance that you will feel embarrassed or ashamed by some of the situations that arise. You may also often feel angry by something the person with FTD said or did, or by what your well parent wants you to do to help. And uncertainty over what may happen as the disease progresses can certainly contribute to feelings of anxiety or fear. Recognize that all feelings are normal and that they will not last forever. Give yourself the time and develop the tools to work through them.

Sadness, loss and depressionThere are many losses that are associated with having a parent with FTD. You are losing one of the most important relationships you have had to a disease you can’t control. Sadness is to be expected. While sadness is usually about loss, depression is usually about feeling powerless. Long-term feelings of deep sadness coupled with feeling powerless or hopeless to change your situation may be indicators of depression which is a treatable medical condition. Ask for help if you think your feelings of sadness are becoming something more serious.

GriefThe pain that comes from loss and change is called grief. Because FTD changes someone you love, the grief you feel can make you have many different emotions – confusion, anger, sadness or fear. Like other strong emotions you may experience grief in your thoughts, actions, physically in your body and in relationships with others.

The feelings can come on suddenly, almost as if they came out of nowhere. They can disappear quickly too. Everyone experiences grief differently and at different times over the course of the progression of FTD. People often associate grief with the death of a loved one. In FTD, experiencing the loss of a prior relationship and “the person you loved” while that person is physically still living can be especially confusing and difficult.

While no one wants to feel the pain of grief, it too is a temporary emotional state that with time and care will pass and leave you stronger. Grief is a reflection of the loving relationship you had with the person. Those memories are a lifetime treasure.

Abuse is abuse – even if it is not intentionalIn some cases, people with FTD can become abusive to family members, either emotionally or physically. You are never expected to tolerate abuse, even if it is the disease causing the person to act this way. Your health and well-being are important. In these situations, get help. Talk to your well parent. Ask for help from your school counselor, a spiritual leader in your community or your doctor. They can take steps to keep you safe.

Tips for handling emotions

What not to do:

Don’t act too quickly.It may feel good for the moment just to DO something, even if in the long run it is the wrong thing. Allowing some time to pass will cause feelings to be less intense. Wait to see if you can find a new way to address the issue.

Don’t keep it bottled up.The worst thing to do is to keep the feelings to yourself and let them build up until you find yourself at a breaking point. Don’t let it get that far. Talk to somebody or express the feelings in other positive ways. FTD is a hard thing to talk about, especially when it is so directly affecting you. Find someone you feel comfortable enough to confide in. This can be an adult, best friend or family member. Don’t hide your feelings.

Don’t self-medicate.Drugs and alcohol will not help. They add confusion to what is already something hard to figure out. And alcohol will make sadness and depression worse and will cause you to use bad judgment.

Don’t believe that no one can help. There may not be many teens near you with parents who have FTD but there are plenty of teens who deal with other illness or loss in their family. Their experience and the expertise of other adults and counselors may help you.

Don’t sleep the day away. Yes, you need a good night’s sleep but spending the day in bed will only make you feel worse. Get moving.

What to do:

Write it, sing it or draw it. Keepa journal. Draw or paint about it. Sing about it. Write poetry about it. Dance out your feelings. Work it out at the gym or pool. As you identify what is bothering you, you’ll find you can focus and find ways to make things better.

Talk it through.Turn to a trusted friend or adult and tell the truth about how you feel. After you “vent” and blow off steam, you can redirect that same energy to sports, music, writing and, of course, your schoolwork.

Eat good food. Make good choices for meals and snacks.You know the drill – less sugar and fat; more veggies, fruit and lean protein. It all adds up to a better frame of mind.

Get some sleep. Sadness can lead to depression, which is about a change in your chemistry. A good night’s sleep will help you cope. If you have trouble sleeping night after night, talk to your family doctor. Don’t be afraid to ask for help.

Talk to a counselor or psychologist.It can be incredibly helpful to talk with a professional -even if your feelings don’t seem overwhelming – as a way of taking care of yourself so that feelings don’t get out of control. If you find that you can’t shake the sadness, are feeling seriously depressed, find yourself thinking seriously about hurting yourself or even ending your life, you MUST get help. Seeking help when you need it is a sign of strength.

Emma

My friends were having a blast in high school but I didn’t want to hang out with them or do any of the things I once loved. I felt sad all the time and I didn’t want my friends to feel sad because of me. One day I began to talk to a classmate whose mother is sick with cancer. It felt good to hear that he was sad too and felt lots of the things I was feeling. Then I began to meet with a counselor a few times a month. That helped me understand the emotions I was feeling. Soon, I started to feel like myself again.

Scott

After my dad got sick with FTD, there were times when I felt really angry. I wanted to blame his disease on someone but I didn’t know who. My friends had “normal” lives with dads who would watch them play sports and take them on vacations. It made me both furious and ashamed that my dad had FTD and could no longer talk or hang out with me like he used to, even though I knew it wasn’t his fault.

Ayisha

For a long time, I just felt so sad that my mother got FTD. I would cry at night when everyone was asleep. I missed the mom she used to be and it was awful to watch her change. After a time I got used to her being sick and I felt less sad – but then I felt guilty for not feeling sad. Now I’ve decided to take one day at a time and really try hard to be happy. I know my mom would want that.